Misdiagnosis & OCD

I feel that! Therapists would tell me to relax and do breathing exercises. They never helped. It wasn't until I did ERP therapy that I finally started to "relax" and find relief.

@Andrea Wells If I may ask, what about ERP helped with relaxing? I always feel tense after doing exposures. I'm still new to it, so I'm trying to find the right balance.

@Lena1998 - I'm glad you asked! I agree. I put "relax" in quotations because I would not describe the ERP process itself as relaxing either. What IS relaxing and relieving, is the bigger picture symptom relief that comes from ERP later on. Living my life free from a debilitating cycle of obsessions and compulsions allows me the peace and space to relax and enjoy my life more in ways that I couldn't before.

@Crook i wish everyone understood this

It's really a shame how many general/talk therapists don't understand all the ways that OCD can present. It doesn't always fit the stereotypes, and it's not always something that you can tell is happening from the outside. I'm so sorry you also experienced a misdiagnosis. I'm glad you know that it's OCD so you can finally seek out the right kind of help. ERP is a game changer!

@Andrea Wells Yes, on week two of ERP, and while it's hard I'm looking forward to lasting change

@3xDisorders - Yes! It's challenging at first, but it works. Rooting for you!

Same - all mental except for excoriation and never being able to fully "relax"

Yes! There are so many nuances that general therapists/talk therapists don't know when it comes to OCD. I spoke to a NOCD therapist recently who said that in their whole 6 years of schooling to become a therapist, they only spent a few hours learning about OCD. It wasn't until they started working at NOCD that they got specific, thorough training to become an OCD specialist. I was diagnosed with panic attacks and anxiety too. Which was true in a way, I *was* anxious, and having panic attacks. But the underlying cause was the terrifying OCD thought cycle I was trapped in. It got missed for years. I'm so sorry you have experienced that too. Have you been able to start specialized OCD treatment since discovering that's what you have?

@Andrea Wells yes but it’s attached to my relationship now. So i get panicky about that. It’s really hard.

@Patrick S it’s like i know nothing now. How i really feel, everything is confused. I’ve been in specialized treatment for 2 months

@Patrick S - Aw Patrick, I'm so sorry. That can happen sometimes when OCD changes from one theme, and then latches onto another. This can happen when you start treatment too once OCD realizes the theme that you're treating doesn't bother you anymore, it will latch onto something new. I've experienced this in my treatment journey. My therapist has helped me to see how all OCD themes are ultimately the same underneath, they are all tied to the same cycle of doubt, uncertainty, and compulsions. Recognizing this helps me to effectively apply ERP tools no matter which topic my OCD latches onto it.

@Andrea Wells yeah it’s just really hard because it’s like i don’t even know if i want to be with my girlfriend anymore, and it could all be from ocd, but it’s so convincing. It’s really an uphill battle.

@Patrick S - Yeah, that does sound like relationship OCD. And you're right, it is SO convincing. It feels so. darn. real. It's overwhelming. It totally can feel like an uphill battle too. I felt that way and was really discouraged at the beginning of ERP, especially as my OCD themes would shift and change. It's disheartening. But ERP is a skill that takes practice, like any skill. The first little bit is challenging, and OCD can be relentless and sneaky and change form. With more practice, you CAN get better at working with it no matter what theme comes up.

@Andrea Wells I keep heading the word, "theme" being used. Does that mean the idea, problem, subject, etc that you are worrying about and how it can change?

@Anonymous - Yes, that's essentially it. You might hear people say "theme", "topic", "type", "subtype" or more when discussing OCD. https://www.treatmyocd.com/education/different-types-of-ocd

Oh my, that breaks my heart to hear. I am so sorry you were dismissed and invalidated like that. It's almost criminal how little awareness so many mental health professionals have about OCD! I wish I could tell EVERY therapist that you can't always tell that OCD is happening on the outside. It's often mental and internal. Have you been able to meet with an OCD specialist since meeting with those other therapists who didn't understand?

and this is why non-specalized regualr talk therapy is dangerous for OCD. it takes specific training in OCD to treat it. i HATE that this happened to you. I'm glad you found NOCD and hopefully now you know they were SOOOO wrong and you are valid. mental compulsions are HUGE and VERY real.

Ugh, I know the feeling. It's so exhausting. OCD can feel relentless. And you're right, OCD is sooo much more than being "neat" or "organized". Superstitions are a very real and scary way that OCD can present. I have experienced that too. I'm sorry you are experiencing this. Please know that with the right kind of treatment, things can get better!

@Hi_123 - What's the link to your post? Happy to check it out!

Oh that's interesting! There certainly can be a lot of overlap between trauma and OCD symptoms, I have experienced that too. I'm glad you are able to get the right kind of care that you need from a specialist!

That's terrible that your family is making fun of you and complaining about your experience with OCD. That is very unkind. OCD is serious and not a joke. You deserve better than that. Unfortunately misdiagnosis of OCD is very common for a lot of people. I hear about it every day in my role here on the intake team at NOCD. I wish I could go around and talk to every therapist and doctor in the world and give them a crash course on OCD. More awareness can help people get diagnosed sooner, and therefore get help sooner.

@Andrea Wells I have heard that many people have had OCD misdiagnosed. However, I have had OCD for decades now. I am sure I have OCD. I have seen different therapists over the years. One therapist I saw is now it NOCD. I feel like I wanted to start therapy again but when I looked into NOCD they told me they did not take BCBS OF ILLINOIS. I have found another doctor that was highly recommended for OCD at the University of Chicago. I was going to call and then I found out that NOCD now does take my insurance. Can you seen two therapists at the same time? I just wondered if each therapist would put a different spin on how they helped me and I wondered if sibce NOCD cannot prescribe meficine, I wondered if the other therapist could I have wanted to get better for so long but have not cone back to therapy. I have a lot on my plate with health issues in my FAMILY.AND now I, too, need to see the doctor. They stress of being sick, havi g sick filly mbers who need help but I am not the best person to help right now, amd a whole big family.that needs me but sometimes I feel like I just cannot be there 100% for tjem.all. There are days I do really good but then there are others not so good! I live with a family.that does not understand OCD at all.amd so I feel very alone through all of this It causes me to be depressed on many days till I crawl out of the depression, pull my bootstraps up and get better...at least for a whole. The problem is that I know I am not the best person I can be...not for myself, not for my family, not for anyone. I want that "best petson" feeling so bad again like I had before but so many things with my OCD are related to my past and I cannot forget them. It is like a dog.ino effect. The bad stuff that happened years ago still haunts me and anything that has anything to do with those memories including shopping at a store I shopped at back then, touching something (even in my house) that rinds me if that sad/bad time, it must is awful. I am not sure where to start, who to start with, etc... Do I take medicine? So many questions.... I read a lot of what folks say and it seems as though their issues are more current. Mi e all seem to stem from.the past when I lost some people in my life. Now, Amy reminder of that makes me avoid anything that makes me think back to those times. Sometimes I even wonder if this os OCD compared to what other folks say but I know at least part of all my troubles if not call stem from.OCD. Does anything here make sense???

@Anonymous - Yes, you are making sense! And it's not uncommon at all for OCD to latch onto past events and memories especially if they were traumatic or difficult. There can be a lot of overlap between past trauma and OCD and those lines can get blurred. I am sorry your family doesn't understand your OCD, and that you are sick along with other family members. That sounds so stressful just on it's own. That's wonderful though that you have access to not one, but two OCD therapists! In general, therapists can not prescribe medicine. You would need to see a psychiatrist, nurse practitioner, or other licensed prescriber for that. You are correct that NOCD does not prescribe medicine, but they CAN refer you to a prescriber that is specialized in prescribing meds for OCD. When it comes to having two therapists, this is okay if one of them is a general therapist, and the other is an OCD specialist. You can not have two generalists, or two specialists. This is redundant and can be harmful from a treatment perspective, and insurance likely wouldn't cover two OCD specialized therapists either. That's awesome that you are thinking about treatment options though! Research shows that doing both ERP therapy and taking medications provides the most relief from OCD. You definitely have a lot of hope to feel better. I know that NOCD has therapists that have additional understanding with trauma and PTSD too and help you process through both the OCD symptoms and the past trauma it's intertwined with.

@Andrea Wells Thanks for getting back to me! I did wonder if my insurance would allow to see this doctor at the University of Chicago and also a NOCD therapist. I thought that might be a problem. I have to check to see if that doctors can prescribe medicine ..To.be honest I really don't want to take medication because I am afraid of what could happen when and hopefully if I would finally fear g the point where I want iff the medicine. Did you take any medication? I see so many people write that the different medicines did not work for them or that when they went off them.their symptoms came back. That alone scares me.

@Anonymous - If that therapist from the University of Chicago can prescribe medicine, then they aren't a therapist since therapists can't prescribe medicine. So if they were a prescriber, would be able to see them AND an OCD therapist. I didn't take medication for a long time because I was afraid. I was terrified that it wouldn't work, or that I would have side effects. Like you, I also feared what might happen if it did work and then symptoms hit me again. You don't need to take meds if you're scared. You never have to do anything in OCD treatment that you don't feel ready to do. I didn't take them for a long time, I just did the specialized ERP therapy and that helped provide a LOT of relief. Once my OCD & anxiety was reduced, I felt comfortable trying meds and it's been going well and providing further symptom relief. But you don't ever have to do that if you don't want to. Some people only do ERP therapy and never take meds and they do really well that way! It's up to you.

Is your therapist an OCD specialist?

I'm so sorry. OCD can latch onto our past experiences with health issues, and/or current conditions that we have. I have experienced health OCD too and the fear, worry, and terror is so intense. I too have called 911 and ended up at the ER so many times scared that a pre-existing health condition had gotten out of control and now I was in danger. I am so sorry you are experiencing that. It's so scary. Big hug to you. Please know that you are not alone, and that with the right kind of treatment you can find RELIEF from this living hell. Have you ever met with an OCD specialist?

@Andrea Wells Not yet, I have one just havent had a chance to make an appointment due to the kidney stones and such.

@Ashes2evil - That makes sense. I hope that you can find the time soon. Sending you strength and support as you navigate taking care of both your physical and mental health.

@Andrea Wells Thank you. I was up all night, couldnt sleep, just worrying about everything

@Ashes2evil - I know the feeling. Be gentle with yourself and rest when and where you can. I know that's easier said than done in times like these. Just do the best you can to take care of yourself in this situation, take everything one moment at a time, and know that things can get better. Squeeze in that first OCD therapist appointment as soon as you can too!

@Andrea Wells Im just tired of everything 😪

@Andrea Wells - Thank you so much for all Your support,and Hard work for me.

@Ashes2evil I understand. Sometimes I feel like that and then suddenly, I will.begin to feel a bit better. I might get mire done, talk to a friend, I looked at my dogs and see how they live life in the moment...not all worried etc. I just started doing better. I have to just stick with that kind of thinking.cyz it can sometimes be easy to just slip back into my ocd thouhts/worries which cause me nothing but misery

@Anonymous Yea I jokenly told my emdr therapist that I would take a lobotomy so I just don't care. He told me sadly that wouldn't work as my Amygdyla is what's messed up and that's hard to reach lol

@Ashes2evil - Well the good news is that ERP and medication can help you to not care! So there is definitely hope.